Giving patients a voice to improve care.

The Melanoma UK app is the first MyRealWorld™ digital platform Vitaccess has launched, back in October 2017. Its features have since been updated a few times to improve the user experience.

We have been and are still working with Vitaccess and the Royal Marsden NHS Foundation Trust to create and develop a digital platform that collects data from people living with melanoma.

Data are collected in the real-world setting using “bring your own device” (BYOD) technology – participants use their own smartphone or tablet to complete questionnaires or surveys at their own convenience. Data are immediately submitted to a central data platform. Users of the platform can see and analyse the anonymized aggregated data in real time.

What data are being collected?

The platform collects rich demographic and epidemiology data across all stages of disease, treatment, and beyond.

Initially, the platform collected data on quality of life in people living with and being treated for melanoma in the real-world setting. Before then, such data have been collected only in the somewhat “artificial” setting of clinical trials. This study is helping us understand how people feel during what has become routine treatment, and afterwards. The pilot stage has collected data in the UK but we plan to extend data collection globally, starting with Australia.

Why digital data collection?

The advantages of electronic data collection are well documented and include reduced administrative burden for participants and administrators, the avoidance of errors in data collection and entry, and fewer items of missing data. Participants at Melanoma UK patient consultation events were overwhelmingly in favour of electronic data collection because unlike paperwork, it cannot be lost and they can complete questionnaires when they want to.

How do patients benefit?

Participants benefit from monitoring and recording how they feel, and the platform provides a convenient way for them to share their data with friends, family and healthcare professionals. Development of this platform has been collaborative.

At a UK Melanoma Patient Conference, we canvassed future participants on the functionalities that they would have used. Based on this extremely positive feedback, features such as a daily pain diary, knowledge center, consultation checklists, and events timeline have been built into the platform. Our digital platform was created with the patients in mind and we have been holding some patient feedback sessions to find out how to improve the users’ experiences.

Who can access the data?

The data will be available free of charge to academic researchers, and through a subscription service to industry. The powerful online portal gives access to dashboards combining graphical representation of the data with appropriate statistical analysis, allowing data to be used readily in models and publications.

Further details:

If the user is eligible, they will see more detailed information about the study, including “informed consent” questions that they will be asked to agree to.

If you’d like to be involved with helping to shape the app development, please contact us at [email protected].

If you have any issues with the app, please visit: FAQs 

iOS 

To install the app, go to the Apple App store (for iOS) on your device and search for Melanoma UK, and download the app. The app icon will appear on the home screen of your device. Tap on the icon to begin. Note that you can install the app on more than one device and use the same login credentials on each device. You should also change the initial password you receive to one of your choosing.

Android

To install the app, go to the Google Play store (for Android) on your device and search for Melanoma UK, and download the app. The app icon will appear on the home screen of your device. Tap on the icon to begin. Note that you can install the app on more than one device and use the same login credentials on each device. You should also change the initial password you receive to one of your choosing.

For more information please contact:

Melanoma UK: www.melanomauk.org.uk Vitaccess: www.vitaccess.com
Gill Nuttall - [email protected] Dr Mark Larkin - [email protected]
Di Cannon - [email protected] Jon Spinage - [email protected]